Cycle 3~Days 1 & 2

Yesterday was the start of cycle three of chemo, 8 hours at the hospital followed by 6 hours of IV fluids at home. Although it was a long day and we were so relieved to be home, it went by without a hitch. He didn't have any nausea, only mild pain, and no other major issues.

Today was a different story entirely, today was rough. Jimmy was woken up at 6am with severe nausea. He woke me up and I gave him his Zofran, (anti-nausea med) but this time it didn't work. We had to be at the hospital early today in order for Jimmy to get his CT scan and that was not a good experience. The nurse who did the intake and put in his IV should not have been at work this particular day and I feel she shouldn't be in the profession at all. Pediatric nurses should have a special kind of personality and they should feel called to do this type of care. Kids are scared, in pain and need to be treated like they matter, not just another random kid in their monotonous day. Jimmy has a fear of needles that has intensified since his diagnosis, so I reminded him before we arrived that he would need to get an IV for the CT scan. When she came in to insert the IV, she gave him no warning, didn't ask him anything, just stuck it in his arm...or should I say jammed it unsuccessfully in his arm? As she did so, he yelled, (which he never does), and as she is looking around for the tape, she is moving the needle around inside his vein. At this point, he is tearing up, she takes her hand off the needle in his arm to reach for something and blood starts spraying everywhere, and she doesn't bother to clean it up or ask if he's ok...nothing. Another nurse who heard Jimmy yell comes into the room and has to tell her to wipe the blood off Jimmy and remove the table so he doesn't have to see it, and then she excuses the first nurse so she can finish taking care of Jimmy herself.

After the CT scan was finished, two of the nurses pulled me aside and let me know that they had already had a talk with her today about the same type of behavior and that I should ask for the other nurses when he goes in for his scans and file a complaint. It was upsetting enough to see someone hurt Jimmy but the part that made me the most angry was for this nurse to act so nonchalant about the whole thing. If she ever comes across this blog, I would just like to say, YOU WILL NEVER TOUCH MY SON AGAIN!

After the fiasco in radiology, Jimmy had to be taken in a wheelchair to chemo because his nausea and pain were worse now and he was really shaky and dizzy. He was given stronger anti-nausea meds which knocked him out, thankfully, because he needed sleep. He was also given stronger pain meds and he was slightly dehydrated, so they gave him something for that, which caused an even longer day than expected, they actually considered keeping him overnight. We were incredibly glad to go home and relax.

Jimmy has had a hoarse, shaky voice for a couple weeks now, which I attributed to allergies or a side affect of chemo, but Dr Dole said it could be the chemo damaging his vocal chords, so now we have to keep an eye on that situation. Chemo causes so many scary, potentially dangerous things that you would never think of as something to worry about in the midst of the greater problem. It would seem as if the fact that my child has cancer would be enough of a worry, but no, I have ten other balls in the air to keep an eye on so that none of them get past me and hit the ground.

If it hasn't become apparent by this point, my love for this child is huge. Everything that we have been through together, everyone who has come in and out of our lives, everything we have mourned and everything we have celebrated has brought us to this point. Everything that has happened in the last 17, almost 18 years, has strengthened our relationship and made us a family. We will get through this together, with the love and grace of God, and we will come out on the other side stronger than ever. I believe this experience will grow Jimmy and show him how much he is loved and supported and that with a little faith, you can get through anything.

Christmas Gift

This morning we received the best Christmas gift we could have ever been given. The dr read the results early and told us the chemo is working, it is killing the cancer cells!!!!!!!!!!!!!!!!!!!!!!!!
He said the response is excellent and we are going to continue with the chemo protocol he is on right now and he doesn't need to change anything. So, we will continue with chemo next Wednesday as planned.

I am so grateful to our dr for not making us wait until next week for the results and I am thankful to God from whom all blessings flow.

Merry Christmas

Wednesday, December 21st~Update

This week has been an emotional roller coaster. Nearly every day something has happened in this ever-changing journey of cancer. Just when we think we have a handle on daily life and what to expect, life throws us a curve ball.

Monday morning, Jimmy was awakened with intense pain in his leg, he came in to tell me what was going on and then just fell to the floor in tears because the pain was so bad. All I could do was give him pain meds and massage his leg until the intensity of the pain lessened. Thankfully he hasn't had that again this week. Today his dr said that it may only get worse.

Since it was the end of Jimmy's 2nd cycle of chemo, today he had another PET scan to determine if the chemo is working. The results could be any one of these: the chemo is working and killing the cancer cells. The chemo isn't working, things are unchanged and we need to change the chemo protocol. The chemo not only isn't working, but the cancer is growing and/or has spread. It never occurred to me that the last was even an option. Of course, since it's the holidays, the person who reads the PET scan is on vacation, so we won't get the results until Tuesday when Jimmy gets another CT scan and sees the dr. We get to spend the next 6 days in limbo, merry Christmas to us.

Yesterday, we were told that UD and the Dayton Gems would like to have a benefit game to honor Jimmy on January 28th! This was such exciting news, and light in a week of such uncertainty. I continue to be amazed at the generosity shown by the people around us and especially by the love God continues to show us through others. Jimmy is so excited and I would love to have everyone there to show Jimmy love and support! (More details coming soon)

The other day we were having a particularly long day of tests, appts and chemo and we were both hungry and tired, so the plan was to get dinner and then come home and relax. When I asked Jimmy where he wanted to eat after leaving the hospital, his answer was "I just want to pick up food and go home to eat so I can be with Charlie." This may not mean anything to anyone else, but to me, it says that home is a safe haven for him and all that matters is our little family of three. One of my main goals as a mom was always to give Jimmy a warm, loving, stable home, so his comment meant everything to me. This Christmas is very important to us for many reasons, and all I want is to make sure it's the best Christmas for Jimmy. I am surrounding him with the people he most loves, (and his favorite 4-legged loves), so that he can just enjoy a day without anything involving drs and scans and chemo. I want him to know he is loved, important, and supported.
I hope everyone has a great Christmas and remembers why we celebrate Christmas in the first place. God is good, all the time.

Half Way Through Chemo!

Jimmy just finished his 2nd cycle of chemo today. The first three days were fairly easy with little to no side effects. He had a touch of nausea the first day, took his medication, and that was it, until last night. Yesterday Jimmy started to have some numbness and tingling in his hands and fingers, it wasn't too bad, so we just chalked it up to another side effect and didn't give it much thought. Today when we went to chemo and Jimmy responded to the litany of questions he is asked before every chemo appt, he told the dr about his hands. We found out that it's a side effect of Vancristine that can go from bad to worse quickly, potentially spreading to other body parts and paralysis. Typically, when Jimmy has problems during chemo, it's due to this same drug, so it's not something to be taken lightly.

An hour into chemo, he developed numbness in his lips and tongue, while that could potentially provide comic relief for me for the day, it's not a good sign. Dr Dole stated that we will see how things go during his off week, and if the situation doesn't resolve itself, the only resolution is to lower the dose of Vancristine. They would only lower the dose a minor amount, but any amount that doesn't follow the protocol of his chemo plan, compromises his cure rate. That terrifies me. However, if they don't lower the dose, it could cause him to be paralyzed. Which also terrifies me. Needless to say, I am praying that the problem vanishes while he is off the chemo drugs.

Other than that, his blood levels are lowered, but still in the healthy range. He has gained 10lbs so far, which I don't really see, but he could definitely use it. His appetite is voracious, his mood is "normal", his spirit is unbeatable.

We have numerous plans from now through the holidays until he starts his next cycle, so it looks like we will be able to attend all of them. Jimmy will be sporting his cool hats and I will be carrying a grateful heart for a fantastic kid.

We Get By With A Little Help From Our Friends

Last Monday morning, Jimmy awoke with a large portion of his hair covering his pillow. He called me into his room to see it and look at his head, he was fairly upset. So, I told him I thought it was time to go ahead and shave his head because I thought it would look better and it would be easier to have it taken care of rather than waking up each morning and seeing more gone.

My friend Tara had offered the day before to come to the house and shave his head so that it wasn't something I would have to do and so we wouldn't have to go out to a salon and have it done.

She came over the next afternoon and Jimmy reluctantly came into the kitchen and sat down. He slowly took his hat off so she could begin shaving his head, it was so hard for him to remove his hat in front of her. I think he slowly began to feel comfortable, thanks to Tara, she continued to talk to him the entire time she was shaving his hair. Thankfully, she has a way of making people feel comfortable and good about themselves, so it really helped him to feel less vulnerable.

Jimmy is blessed with a beautiful bald head! I think he looks quite handsome, he reminds Tara of Michael Phelps (yuk), and he reminds me of Lex Luthor on Smallville. The most astounding thing is that even though he had just had his head shaved due to the fact that he is undergoing chemotherapy, he still flashed his ever present smile. That's my boy :)

Friday, December 2nd~Update

Jimmy had his end of first cycle checkup on Wednesday. He gained 7 pounds in a little over a week, which is caused by the Prednisone. The nurses stated that he could continue to gain weight this way throughout the coming weeks. It will be interesting to see Jimmy with a little bit of weight on his body, he has always been tall and thin. Well, up to age two, because then he resembled a Buddha~super cute :)
The doctor stated that since Jimmy is so thin, he will have more problems with body and joint pain from one of the chemo drugs. It typically causes more aches and pain when there isn't as much body fat.
A couple of the side affects Jimmy is dealing with have come on a little too soon, usually kids don't get throat pain and mouth sores until the 2nd cycle. Dr Dole said that this will probably mean that his symptoms will progress and cause him more trouble during the coming weeks. Hopefully, Jimmy will prove them wrong.
Jimmy has lost a large portion of his hair, a couple of minor bald spots, but mostly just a rapid thinning. Especially on the side he sleeps on and where he wears his Turtle Beach headphones for playing Xbox. He isn't happy about losing his hair by any means, but so far he hasn't gotten upset about it. Whereas every time I notice more gone, my heart sinks.

I think that when God gives you a child and you are granted motherhood, it should allow you the ability to take away a child's pain. It's so hard to love someone so much and not be able to fix it. When Jimmy was little, he used to think I could do anything. He thought I could make everything alright with a kiss and a band aid, I so wish I could do that now. Now he knows that I can't magically banish this sickness in his body, but he know things that are realistic. He knows I will be with him the whole way through. He knows I will be sitting in the infusion room while he gets chemo. He knows that I will be with him when he gets poked, scanned, and scrutinized. He knows that I will be here for him when he needs me~for food runs, to listen to him talk, answer his questions, protect him, be attentive to his treatments, and when the time comes, shave his head. All these things, I do because I love him more than anything, he is so much a part of who I am. He is my son, my child. I am a flawed, imperfect person and I have made many mistakes in my life, but Jimmy is the one thing I did that was perfect.

God's love is perfect. He doesn't make mistakes. You are His child. He didn't make a mistake when He made you. If I, as an imperfect person, love my son as much as I do, imagine how much God loves you. If I feel as connected as I do to my son, imagine how much God feels connected to you. He knows all, He sees all, He knows the pain you are in, the guilt and suffering you feel and also the joys. He wants to be with you in all of it. What are you waiting for? All you have to do is ask...

For My Jimmy

I am so thankful for you Jimmy. You are the love of my life, my best friend, my sidekick, my hero, my son. You have shown me what it means to love someone with your whole heart, unconditionally and endlessly. If you feel weak or scared, I will be strong for you. I will always be where you need me. I'm going to love you through this. I love you

Real Men Wear Hats

Irony can be a sadistic thing. During the two weeks of chemo treatments, Jimmy has done remarkably well. He has impressed everyone, including seasoned nurses, with how well he has physically tolerated chemotherapy and with his irrefutable attitude that this will not beat him; all with his innate ability to throw out a one-liner as needed.

As we have gone through all the motions of what a family does when your child has cancer, I think I have been lulled into a false sense of deliverance from the chemo symptoms that are the most terrifying to me. Those symptoms being pain, constant vomiting, and hair loss. The latter not so much terrifying, as much as the visible sign to the world at large that Jimmy has cancer. Maybe I have just contrived this scenario that since he hasn't had any of these symptoms while in this first cycle of chemo, then he is probably not going to be subjected to them at all.
This week is his week off of chemo and as I said, irony can be a sadistic thing. This is the week he has had the most symptoms, and he is now taking his nausea medicine more often and the pain pill at regular intervals. Today was also the beginning of his hair loss. While it was only a little bit, it stopped my naivete in it's tracks. The instant he came in to tell me, my heart broke for him. I know that it's very likely going to progress this week. So, I did what any good mother would do, I got in my car and drove to Kohl's and bought him the hat he wanted to make him happy. I loved his smile when he put it on and my grandma said "Are you really going to wear that in public?" His response...laughter and a big YES!! How great is this kid?!!
While I hoped and prayed for asylum from the worst symptoms, I know this will be another thing that he will get through with flying colors. (and a few cool hats)

End Of The First Cycle

Jimmy had his 4th chemo treatment yesterday and that was the last treatment in the first cycle. He hasn't had any symptoms so far, except burning in his throat, jaw pain, and yesterday he started having body aches and pains. He takes Tylenol w Codeine for that and it seems to help him greatly. He is eating and drinking normally, which is good because he can't lose any weight due to how thin he is already. So, he is off chemo all next week and doesn't return until the 7th, which will be another 10hr day.

I was able to talk to my cousin today, her husband was diagnosed with cancer the same time as Jimmy, which is still unbelievable to me, so it was good to talk to someone who not only knows and loves Jimmy, but is going through a lot of the same things. She gets it. There are a lot of very supportive people in our lives, but there are a few people who for whatever reason, say the dumbest things to us. For the most part, we don't fault them, sometimes people just don't know what to say, but there have been times when I think to myself, "Really? Did she just say that to me?" I know that God is already in all the tomorrows, He already knows how things are going to work out and He has a plan for Jimmy and my cousin's husband. But even knowing that, being told that we are "lucky" for this or that, doesn't help, being told to be grateful that he has cancer, doesn't help, being told to live life like it's our last day, def DOESN"T help---my son still has cancer! My child that I have raised by myself, the little boy who has filled my heart with so much love and my life with so much laughter, has cancer. I am not happy about that in any way, I am not going to pretend to be ok about it, and if I want to have a bad day, I will.

Now that I have had my little rant, I will say that through this I have grown closer to God and even closer to my son. There are small blessings in the midst of this nightmare. God has shown us His perfect love through the service and generosity of the friends and strangers around us. He has shown me that I am a strong woman, I have a fierce love for my son, and I do rely on God. I believe he is showing my son what a christian family means.

Today is Thanksgiving and I hope everyone has a wonderful day and thanks God for all the blessings in their lives. I thank all of you who have prayed and continue to pray for Jimmy's health. We are thankful for you.

Day three of chemo

Jimmy's chemo was only supposed to last 2 hours today, but we were there 4 hours because he was feeling sick, so they slowed down his drip. Once he started to feel nauseous, they gave him the same anti-nausea med from the first day and it knocked him out--sitting up, in mid-sentence. At one point they were trying to remove the needle, for the weekend, that inserts into his port , and as he was taking the bandage off , (which is pretty painful), and he literally fell asleep.

This med that they give him for nausea not only makes him sleepy, he gets dizzy and wobbly on his feet, so he has to be taken downstairs to leave in a wheelchair, otherwise he would be walking into walls or just falling over in general. It's obviously amazing medicine to be able to combat throwing up after they fill his body with poisons.

I did have a bit of a mama bear moment today. The dietitian, whom we have yet to speak to, came in to the room today to go over her packet of paperwork regarding food Jimmy should eat, what to give and not give when he has certain symptoms, etc...everything I had already researched, as he was feeling sick and dealing with the after affects of the anti-nausea med. She had the worst timing and continued trying to read over this packet out loud to me (which I hate, I can read myself thank you) and kept trying to read and interact with Jimmy. God bless his heart, he was nodding off and trying desperately not to fall asleep and answer her and she was oblivious and just kept right on talking. So, I just stopped her and told Jimmy he could go ahead and sleep and not answer anymore questions and asked her to please just let him sleep. DUH

So, Jimmy fell asleep after we returned home about 5:30 and with the exception of about an hour, has been sleeping all night with Charlie, his faithful companion.

Day two of chemo

Today was a lot easier day at the hospital than yesterday, we were only there 3 hours. It seemed like we had just gotten there, when they unhooked Jimmy's port from Bob. Today Jimmy was able to take his Xbox and play it while he got chemo, so that was a great distraction for him. He only received three chemo drugs today, and they gave him different medicine for anti-nausea. So, we are hoping he will do even better than he did yesterday.

Today Ronald McDonald and the huge mascot from the Dragons were visiting the chemo wing and they came in to see Jimmy, that was pretty funny. He just smiled and said hi, and then looked at me and said "ok, now what do I say?" They gave him a Dragon's hat which he did seem to like, he's just a little too old to appreciate men in giant character costumes. (and I don't care who he is, a clown is a clown, and Ronald McDonald is creepy!)

The nurses told him that he will be contacted by Make a Wish Foundation and he needs to start thinking about what he would like. He is able to chose a vacation, someone to meet...anything he can think of. You should hear what two of his ideas are...

Our new lifestyle

The education nurse talked to me today about various things regarding what to watch for and what to do if Jimmy has symptoms and such. A fever is very dangerous for Jimmy to get, if he gets a fever of 100.6 or over, I am to call the hospital and let them know, and then get him there immediately, within an hour or less after the start of the fever, he will be given intravenous anti-biotics. A fever means a minimum of a 2 day stay in the hospital--we want to avoid that at all costs.

So, Jimmy cannot be exposed to anyone who has a cough, sniffles, rash, or diarrhea...let alone anything worse than that. So, if you plan on seeing us and have any of those things going on...DON'T! I will ask you, no matter how embarrassing it may be. If you even think you might have caught a stomach ache from your 3rd cousin in Arkansas that you haven't seen in 4 years, do not come around us. Seriously, if Jimmy gets a fever, I will find you. Just kidding. Sort of.

Jimmy cannot pet reptiles or anything in the rodent family. He can't share anything...food, drinks, chapstick, utensils, cups, nothing. He cannot eat or drink anything over 24hrs old, no leftovers, no opened water bottles. I had to throw out nearly everything in my refrigerator. No mouthwash with alcohol. He now has to be vigilant about sunscreen. As well as washing his hands, and anyone who comes over is going to have to swim in Purell. Well, at least use it. I have to get a flu shot in order to not expose him. I have to keep a mad amount of Lysol wipes at home to clean door handles, light switches, and any and all surface areas. After learning all of this, I was told to allow him to do all his normal things. Go to gatherings, movies, be around people! I'm sorry, what? Unless he is at a time when his white blood cell count is down, then we can only do things outdoors where it's open air, but not expose him to large groups of people and such.

So, basically, we are going to be living in a bubble for the next 4 months...but after that, Jimmy is going to be healthy.

First day of chemo

Apprehensive would be the perfect way to describe the way I felt walking into Children's hospital this morning for Jimmy's first day of chemo. I kept watching Jimmy for some sign of nervousness or fear, as I watched him inhale a sausage McMuffin in the car on the way...nothing. I asked how he felt and if he was nervous as we walked through the parking garage...nope. I quickly glanced at his face as we walked through the doors of the elevator taking us to the 2nd floor oncology wing...zero. As a matter of fact, he was cracking jokes all the way down the hall.

We were led to Infusion Room #8, (all the kids have private rooms), inside was a recliner, a couple other chairs, a bed, tv, phone, table, shelves w books and toys for younger kids, and the pole to hang the chemo IV bags on. (Jimmy immediately named his "Bob") All in all, a fairly comfortable room, considering it's purpose. Over the 10hrs we were there, he received 6 chemo drugs, and various other meds to combat nausea and dehydration, all hung from Bob, next to Jimmy all day. Jimmy went to the bathroom, Bob followed behind. Jimmy got up to stretch and walk around the room, Bob was beside him the whole time. Jimmy and Bob are going to be constant companions over the next few months.

During the time we were there, Jimmy ordered food, watched Ridiculousness and Tosh, (both of which I think are incredibly stupid, but it entertained him), surfed YouTube for subliminal message videos, and occasionally threw out a one liner that had the nurses in stitches and me, too. You would never have known he was there for chemotherapy just by his demeanor and attitude. He never complained, was never rude, never asked for anything...he just sat there and allowed the nurse to do what needed to be done to make him healthy.

Around 5pm, all of a sudden, he said he had pain in his stomach, so the nurse gave him a hefty dose of Benadryl. While she was putting it in his port, he fell asleep...hard. At about 6:30 we eventually woke him up and he said he was feeling sick, so the nurse gave him a anti-nausea med, which made him dizzy and sleepy. We have been home for 3 hrs now and so far, he hasn't had any more symptoms, and seems ok. He has yet to throw up or have any other problems.

I am so blessed to have the privilege of being Jimmy's mom, I have never been so proud of him than I have been the past few weeks. Not because he hasn't gotten scared or nervous, but because of his inner strength, perseverance, and positive attitude. All he wants is to get better, and come home to his house, his dog, and play games with his friends.
I am so thankful for the amazing nurse that took care of Jimmy today, I will never forget how great she treated my son, how she went out of her way to make us feel comfortable today, how she took the time to explain everything, and anticipated his every need.
I am so blessed to have such great, caring friends in our life who encourage us and who have been so supportive .
We are so blessed to have such an incredible God who knows what's in our hearts and minds and makes His presence known to give us comfort and peace.

Monday, November 14th~Update

Today we had our appointment to go over Jimmy's chemo medications and the short and long term affects. Discussed how they will handle all the things that will come up with having chemo such as nausea and hair loss. He will be on a very heavy dose of steroids to take at home, which will cause him to gain weight, (he was actually excited about that side affect). The steroids will cause his appetite to be tremendous on the days he isn't sick.

Some of the long term side affects are damage to his kidneys, bladder, liver, and heart. Some of which won't show up for 20yrs. His chance of sterility is 30%, which is disheartening, but we will leave it in God's hands, which is where the decision would lie under normal circumstances.

The list of short term side affects is a mile long: nausea, hair loss, stomach pain, numbness and tingling of hands and feet, burning sensation in hands and feet, acne, increased blood sugar, mood changes, low white blood cell count, mouth sores, fever, dizziness, jaw pain, blurred vision, extreme fatigue, muscle weakness, skin irritations, metal taste in mouth, and chills. One or two of these things would be difficult, let alone several at once. Praying that his side affects are minimal and he gets through the chemo without having too difficult of a time.

The first chemo appt on Wednesday will take about 10hrs, 3hrs on Thursday, and 2hrs on Friday, and then 2 hrs next Wednesday. Off 2 weeks and then start all over again.
When Chemo is finished, we will be driving to West Chester daily for radiation. All in all, the whole process should take about 5 months. If everything goes as planned, chemo should be finished by March 2nd, and then radiation will probably start about 2wks after that.

We are thankful that it wasn't stage 4, which could have meant daily chemo for up to 10hrs a day. We were also told today that Jimmy's treatment is one of the shortest of anyone they currently have, some kids are there for 3 yrs. That just broke my heart for the children and their parents, some of which are toddlers. I think about my cousins going through this at their ages and I can't even imagine. Since Jimmy is 17, he is able to take much stronger drugs to combat the disease than if he were younger.

Two things I know for sure: One--We are going to beat this and Jimmy is going to be healthy and cured. Two--We are going to have one hell of a party when it happens!

Friday, November 11th~Update

The bone marrow results were NEGATIVE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

So, that means he has Classic Hodgkins Lymphoma Stage 2A. Thank God for answered prayers!
Now the testing is done, we know exactly what we are dealing with and can start the process of getting this evil disease out of my son and getting him healed so that he can go on to have an amazing life. We know it's still going to be a long, hard road ahead, but at least we can be thankful that he isn't stage 4, which scared me beyond anything I would express.

Jimmy is still in some pain from his port, but the nurse said it's normal and it will probably continue to hurt into next week when he starts chemo.
He started to get angry today, and frustrated with the fact that he has this "thing" in his chest that sticks out and bothers him. He had trouble sleeping last night, partially due to pain and partially due to the fact that he couldn't lay on his stomach. At least now he has prescription pain medication that seems to be helping.

Thank you God for answering our prayers and allowing the results to be negative today, now we need to continue praying and watching you work miracles to heal my son.

Port Surgery Day

Today was the first day to the start of a long road ahead. Jimmy had his surgery this morning to have his port put in and his bone marrow test. I was nervous of course, but Jimmy was cool as a cucumber about the whole thing, he wasn't concerned at all...especially after having Valium before they wheeled him into surgery. Wow, did that have some kind of affect on him, he was a riot! Really wish I had video of the entire scene because I would have had some good material to tuck away for future use. (like when he referred to the pacemaker opening on his gown as his "nipple pocket") After a good 30 minutes of saying all kinds of crazy things, he started cracking himself up and getting the giggles. Everyone knows Jimmy is funny, but this was on a whole other level.

His port surgery went well, although he did have pain after he woke up and they had to give him extra pain medication, which meant it took longer for him to leave recovery. Hearing that he was in pain after surgery and I couldn't see him is such a helpless feeling. Didn't they know that was my son in there hurting? He continues to have some pain, but it's not too bad. He's home in his own surroundings and comfortable with our little Charlie by his side.

The situation became even more real to me today once it hit me that the port is attached to his heart, and I can now see it underneath the skin on his chest. I've been on the forefront of every bit of information, every test, scan, and every dr appt, but today was the day it really hit me that we are doing this. They aren't going to call me and say "oops, sorry Ms Jenks, we made a mistake, your son is just fine," that scenario is long past happening. They wouldn't do surgery and insert a foreign object into my son's heart unless it was serious.

So, we are going to go down this path of chemo and radiation; throwing up, losing hair, extreme fatigue...but we will do it together just like we have for 17 years, me and Jimmy, two peas in a pod. Except that now, we have someone else who walks the path with us, and He is stronger than anything that gets thrown our way. I believe in the power of prayer and I believe that God hears all the people praying for Jimmy every day.

We did get some good news today, the CT scan came back negative for the cancer spreading to his abdomin. So, we are just waiting to find out about the bone marrow test, we will know by 4pm tomorrow. Thank you for continuing to pray for my son.

Monday, November 7th~Update

Home from our appt at Children's where we saw Jimmy's oncologist, it was information overload. We received the results from Jimmy's PET scan, had a mini-briefing on Hodgkins and information on what the next steps would be with his surgery and chemo.

The PET scan showed that along with the mass on his lung, there are numerous cancerous nodes in his chest. The most concerning aspect is that the report stated a mild suspicion of something in the bone marrow, which would be very bad. They will do a bone marrow test during his surgery which will tell us definitively whether or not it's in the bone marrow. Please be in prayer for negative results.

Jimmy will have 4 courses of chemo~3 days a week the first week, then 1 day the second week and then off for 3 weeks, and then it starts all over again over the course of 3-4mths.
Tomorrow, we go to Children's all day to have 5 scans and tests done~a CT scan on his belly to make sure there is nothing there, and testing on his heart, liver, kidneys and breathing function to make sure he is viable for chemo.

On top of everything, we found out today that there is a chance the chemotherapy could cause him to not be able to have children in the future.

As of right now, his doctor is saying he has Classical Hodgkins Lymphoma Stage 2A (A=little to no symptoms).
If they find cancerous nodes in his abdomen, he will progress to Stage 3, if they find that his bone marrow test is positive he will be Stage 4. PLEASE pray that these are both negative.

Jimmy will have his surgery to have his port put in at Children's on Thursday at 10:30am. On Friday, we will get the results from all the testing and learn what will happen with chemo. On Wednesday the 16th, Jimmy will have his first chemo appt.

All of this still seems like a horrible nightmare, I just don't understand why this is happening to my son.

Friday~November 4th~Update

Jimmy had his PET scan today at Kettering Medical Center. For those of you blessed enough to not be in the know, it's a huge nuclear imaging machine that scans his entire body, every organ, to see if cancer is in any other part of the body. Jimmy was injected with a mixture of a sugar solution and a radioactive substance (tracer) that moves through his body to show cancerous areas. It concentrates in an area where there is cancer and shows up on the scan. Because of the way the tracer concentrates in active areas, Jimmy had to sit in a recliner in a dark room for an hour waiting for the tracer to distribute throughout his body. After which, they took him to the scan room where he had to lie on a table and have scans done for an hour, 7 sections about 4-5 min each, plus CT scans sporadically. I was allowed to sit in the room, behind his head while this was being done and talk to him since confined spaces make him uncomfortable.

This is what I was watching: Jimmy laying on a table wrapped in a blanket, arms above his head, unable to move, while he moved inside a huge machine that had lasers all over him to point out where it scanned. At one point, they were scanning his brain and there were red lasers all over his head and face. This is not an image that I can see of my child and not have a reaction. It was awful to see him in such a vulnerable place.

We FINALLY get all the results from pathology and from the PET scan on Monday afternoon when we have our appt with the oncologist. At that appt, we will schedule the surgery to have his port put in and bone marrow testing done. If all that happens on time, he will start chemotherapy on Friday. Please continue to be in prayer for Jimmy, I have a strong gut feeling, (mom feeling), that when he goes for his first chemo appt, that is when it's going to become real and hit him. I'm pretty sure it will happen for me when he has surgery, then his first chemo.

Courage Is Fear That Has Said It's Prayers~Dorothy Bernard

Have you ever seen movies where the main character is standing still and all the people around them are in fast forward, swirling in busyness, while they are frozen in place, unable to comprehend reality? This was me at our first visit to the pediatric oncologist. I was like a functioning alcoholic, I walked into the hospital passing people along the way, carrying my son's diagnosis like a secret I didn't want to get out. I was in survival mode; sign in, paperwork, wait in rainbow colored holding tank, vitals, run-down with nurse, meet and greet with doctor...all the usual requisites for a first time office visit. Except for one key thing...it was an oncology office.

This fact showed up in little places along the way, inspirational posters on the wall declaring courage and positivity, materials with recipes for things to eat when you can't eat, a red, locked box on the wall for discarded chemo needles...although I was growing uncomfortable, I was dealing. Until it was time to go to the front desk and schedule his next appt. As I stood at the desk waiting my turn, children of all differing ages passed by to go into the rooms where they would have chemo administered. I remember thinking that I felt so bad for them and wanted to hug them and make everything all right...and then it hit me, my son is one of those kids, we are in this office for the very same reason.

At that moment, it hit me that this is what our life will be for the next few months, coming and going like we belong there, the unfamiliar becoming familiar. I started to feel anxious and could feel my chest tighten and the tears were threatening to overtake my resolve to be strong and not fall apart. At that moment, I could hear my son laughing in the waiting room, quickly followed by the even louder laugh of my aunt who was with him, as they were playing Pac-Man and cracking up over whatever was happening on the screen.

Courage is a word I tend not to throw around lightly, but my son is the epitome of courage. He is stronger than I could ever pretend to be, he is brave in a way I never would have imagined. Every test, scan, blood work, IV, examination; he just plows through with rarely a complaint. As I stand on the side and shake the urge to grab him and run to a magical place where he isn't being poked, prodded and invaded.

It's always being said that children take their clues from a parent on how to act and feel, but I think I am learning more on how to be courageous from my son than he has ever learned from me.

The Beginning of Our New Normal

I would imagine that everyone who reads this is aware that 9 days ago, our world as we knew it, changed forever. After taking my son to the emergency room for what we thought was his yearly bout of bronchitis, we were told that the ER doctor found an "abnormality" and we needed to see our family doctor the following day. Hearing a dr say the word abnormality in regards to my child, was like he handed me a grenade, pulled the pin and walked away. I was in an immediate state of panic. After having seen our family dr, he referred us to a pulmonologist to do further testing and rule out anything serious. Jimmy had a CAT scan which revealed a large mass on his lung, the dr stated that the mass was highly suspicious for Lymphoma and they ordered a needle biopsy the following day. After the procedure was over, we were told we would have to wait 3-5 days for the results. Those were 3 of the most anxiety ridden days of my life. I watched as my son shut down, he wasn't eating, wasn't talking, and just wanted to zone out and play Xbox with his friends. Completely understandable and maybe the only time I can say I am truly grateful for video games. Over the course of those 3 days, I had quite a few discussions with God. The first day, I was sure that He knew this had to be a mistake and He would allow that to show up in the pathology results and we would go on our merry way. The second day, I started to think maybe something could be wrong, but if so, it would just be pneumonia or a weird viral or bacterial thing that some nasty tasting anti-biotic would get rid of in a week or so. By the morning of the day to get the results, I was numb and terrified. I was pretty much praying without ceasing. God, PLEASE don't let my baby be sick, please don't let the dr say he has this disease I am afraid to say by name. Please God, I know you can work miracles, I have seen you do it, heal my son, too. He is a good boy and doesn't deserve this. I continued sending up prayers all the way to the hospital.

It was not to be, as I sat in a cold, hard chair in a sterile room, the dr proceeded to tell me that my son has lung cancer--Hodgkins Lymphoma. My beautiful, funny, soft-hearted baby boy has cancer. My son who is supposed to be having his senior year with all his friends, looking forward to graduation and a future in computers. My son has cancer. I sat there in tears half listening as he continued to talk about a referral to a pediatric oncologist at Children's and what would happen when we went in for an appt...but all I could think about was when my son was 4 years old, sitting in the living room floor in his Woody costume watching Toy Story and giggling, saying "look mommy, there's Woody!"~that little boy can't have cancer.
Telling Jimmy he had cancer was the single hardest thing I have ever done in my life. After I told him, I asked him how he felt and what he was thinking, anything to hear him say something, anything. Through the tears in his eyes, he said "nothing to say, it sucks, but I will get rid of it and be fine...will I lose my hair?" NEVER, will I underestimate my son again. I have watched him deal with this for the past week, at times with anxiety, but mostly courage and strength. He is the bravest person I know. I have never been so proud to call him my son and I am so grateful that God allowed me to be his mom. I am so blessed .
Some may wonder how I can speak of God in a loving way, or why I don't blame Him for my son being sick. It's simple, God did not give my son cancer. God held my son while he was getting a CAT scan, He held him while he was scared during the needle biopsy, and He was with us when we heard the darkest news. He loves us and will be with us as we go through these next terrifying months. If it weren't for my relationship with God, I know that I would not be able to stand in the face of this evil disease and say we will beat it and my son will be healed.